Narcolepsy and the Cloak of Isolation

As the years go by, there's a subtle weight that descends, a deepening sensation of isolation that accompanies the unrelenting hold of narcolepsy. It is more than the neverending struggle with fatigue and sleep disturbances; it is a complex journey through a lifetime of difficulties that are frequently overlooked by others.

Beneath the apparent challenges comes an unsaid reality: the most important — and often disregarded — aspect of narcolepsy is its isolating character. I’ve started to feel as though narcolepsy wraps us up in its own unique cloak of isolation.

The physical and mental isolation of narcolepsy

There are 2 distinct types of isolation in this narcoleptic journey — physical and mental.

The physical isolation is the more apparent of the 2. It can be found in those moments when you excuse yourself from a family gathering or event to succumb to the imminent sleep attack you can feel seconds within reach.

Physical isolation also speaks to physical evasion — all the times when we avoid attending events or decline invitations because we know the toll it will take on our bodies, or because we’re simply afraid of what could happen while we’re there.

Instead of mingling with others, attending social events like everyone else, we find solace in the familiarity of our homes, wrapping ourselves in our cloaks of isolation.

Stigma and misconceptions worsen our isolation

On the other hand, there’s the mental isolation that we face every day. This one is probably one of the most challenging because it's as invisible as our condition. It weighs heavily on us every second of every day.

It’s inflamed every time we are not believed, are misunderstood, or have our condition belittled. It’s the stigma surrounding narcolepsy that further deepens this sense of isolation as misconceptions prevail. It's not just falling asleep; it's a struggle against societal misunderstanding.

Explaining, justifying, and downplaying are exhausting

The unpredictability of narcolepsy can be extremely socially isolating.

In the first few years after being diagnosed, I felt a surge of determination to explain my newfound reality to others. Yet, after almost 6 years of attempting to convey the intricacies of this condition, a part of me has inevitably given up.

The constant need to explain, justify, or downplay the challenges of narcolepsy can be one of the most emotionally draining issues we face. It's a struggle against not only the symptoms of the condition but also the societal preconceptions that cast a shadow over every interaction.

Stigma's impact on social and work life

The stigma surrounding the condition amplifies this isolation. Society, fueled by stereotypes perpetuated in the media, often reduces narcolepsy to a caricature — someone who simply can't stay awake. It's a narrow narrative that fails to touch even the surface of this debilitating condition.

The stigma extends beyond social circles into professional realms. Job prospects might be influenced by misconceptions about productivity and reliability. The fear of judgment or potential discrimination adds another layer to the isolation, prompting many of us to navigate our professional lives cautiously, sometimes at the expense of our own well-being.

Feeling less alone with community

One of the only things I’ve managed to find to combat this isolation is by reaching out to a community.

Although most of the connections I’ve made continue to be strictly virtual, there is something incredibly empowering in feeling heard, seen, and understood by someone... virtual or not.

It’s the one thing that continues to give me the strength to put myself back out there, even when all I want to do is curl up and wrap myself up in my cloak of isolation.